Florence KY | IRS ruling year: 1995 | EIN: 43-1709945
An EIN is a unique nine-digit number that identifies a business for tax purposes.
An EIN is a unique nine-digit number that identifies a business for tax purposes.
Organization Mission
RAISING AWARENESS OF AND SUPPORT FOR THE SHWACHMAN-DAIMOND SYNDROME DISEASE. THIS IS DONE THROUGH EDUCATIONAL CONFERENCES AND THE PUBLICAITON OF PERIODALCS SUCH AS N ... (More)
Rating Information
Good
This charity's score is 89%, earning it a Three-Star rating.
Charity Navigator's ratings previously did not consider Leadership & Adaptability, Culture & Community, or Impact & Measurement. The historic rating mainly reflects a version of today’s Accountability and Finance score. More information on our previous rating methodologies can be found on our rating methodology page.
Rating histories are available for a growing number of rated organizations. Check back later to see if this organization has a rating history!
This beacon provides an assessment of a charity's financial health (financial efficiency, sustainability, and trustworthiness) and its commitment to governance practices and policies.
Majority Independent Board Members - 100% independent members
10 out of 10 points
Industry professionals strongly recommend an independent governing body to allow for full deliberation and diversity of thinking on governance and other organizational matters. We check to see that a majority of board members are identified as independent on their tax form.
Source: IRS Form 990
Independent Board Size - 11 independent members
10 out of 10 points
Industry professionals strongly recommend an independent governing body to allow for full deliberation and diversity of thinking on governance and other organizational matters. For most organizations, we check to see if the organization has at least three independent board members. For large, donor-funded organizations, we check to see if the organization has at least five independent board members
Source: IRS Form 990
Material Diversion of Assets - None
10 out of 10 points
A diversion of assets — any unauthorized conversion or use of the organization's assets other than for the organization's authorized purposes, including but not limited to embezzlement or theft — also can seriously call into question a charity's financial integrity. We review the charity's most recent IRS Form 990 to see if the charity has reported any diversion of assets.
Source: IRS Form 990
Tax Form Disclosures and Policies
Full Credit
Partial Credit
No Credit
Website Listed on Tax Form - Listed
3 out of 3 points
Charity Navigator looks for a website on the IRS Form 990 as an accountability and transparency metric.
Nonprofits act in the public trust and reporting publicly on activities is an important component.
Source: IRS Form 990
Conflict of Interest Policy - Missing
0 out of 7 points
Charity Navigator looks for the existence of a conflict of interest policy on the IRS Form 990 as an accountability and transparency measure.
This policy protects the organization and by extension those it serves, when it is considering entering into a transaction that may benefit the private interest of an officer, director and/or key employee of the organization.
Source: IRS Form 990
Whistleblower Policy - Missing
0 out of 7 points
Charity Navigator looks for the existence of a whistleblower policy per the IRS Form 990 as an accountability and transparency measure.
This policy outlines procedures for handling employee complaints, as well as a confidential way for employees to report financial or other types of mismanagement.
Source: IRS Form 990
Document Retention and Destruction - Missing
0 out of 7 points
Charity Navigator looks for the existence of a document retention and destruction policy per the IRS Form 990 as an accountability and transparency measure.
This policy establishes guidelines for the handling, backing up, archiving and destruction of documents. These guidelines foster good record keeping procedures that promote data integrity.
Source: IRS Form 990
Documents Board Meeting Minutes - No
0 out of 3 points
Charity Navigator looks to confirm on the IRS Form 990 that the organization has this process in place as an accountability and transparency measure.
An official record of the events that take place during a board meeting ensures that a contemporaneous document exists for future reference.
Source: IRS Form 990
Website Disclosures
Full Credit
Partial Credit
No Credit
Tax Form Posted on Nonprofit's Website as stated on Form 990 - Missing
0 out of 3 points
For almost all charities, we check the charity's IRS Form 990 to see if it discloses that the Form 990 is available on the charity's website. As with the audited financial statement, donors need easy access to this financial report to help determine if the organization is managing its financial resources well.
Source: IRS Form 990
Financial Metrics
Full Credit
Partial Credit
No Credit
Liabilities to Assets: Ratio - 2.52%
15 out of 15 points
The Liabilities to Assets Ratio is determined by Total Liabilities divided by Total Assets (most recent IRS Form 990). This ratio is an indicator of an organization's solvency and/or long-term sustainability.
Source: IRS Form 990
Program Expense: Ratio - 79.58%
25 out of 25 points
The Program Expense Ratio is determined by Program Expenses divided by Total Expense (average of most recent three IRS Forms 990). This measure reflects the percent of its total expenses a charity spends on the programs and services it exists to deliver.
Source: IRS Form 990
Additional Information
Total Revenue and Expenses - Data Available
This chart displays the trend of revenue and expenses over the past several years for this organization, as reported on their IRS Form 990.
Salary of Key Persons - No Data Available
No Data Available
Salary of Key Persons data is currently unavailable for this organization. This data is only available if this charity has at least one year of electronically-filed Form 990 data filed within the last 3 years. In some cases, there may be an electronically-filed 990 on file but the nonprofit may have not included the information and therefore we cannot post it.
IRS Published Data (Business Master File) - Data Available
Organization which receives a substantial part of its support from a governmental unit or the general public 170(b)(1)(A)(vi) (BMF foundation code: 15)
Affiliation:
Independent - the organization is an independent organization or an independent auxiliary (i.e., not affiliated with a National, Regional, or Geographic grouping of organizations). (BMF affiliation code: 3)
Data Sources (IRS Forms 990) - Data Available
The Form 990 is a document that nonprofit organizations file with the IRS annually. We leverage accountability and finance data from it to form Encompass ratings. Click here to search for this organization's Forms 990 on the IRS website (if any are available). Simply enter the organization's name (Shwachman Diamond Syndrome Foundation Inc.) or EIN (431709945) in the 'Search Term' field.
Impact & Measurement
Score
100
This beacon estimates the actual impact a charity has on the lives of those it serves, and determines whether it is making good use of donor resources to achieve that impact.
$31,414 total costs / $31,414 of financial assistance provided = roughly $1 provides a dollar's worth of financial assistance to a patient. [2021 USD]
Program Context
Shwachman-Diamond Syndrome: This program provides financial assistance directly to patients and their families.
Data Time Period
12/9/20 to 12/14/21
Benchmark for Scoring
Impact scores of financial assistance to patients programs are based on income generated relative to cost. Programs receive an Impact score of 100 if they increase income for a recipient by more than $2 for every $1 spent and a score of 80 if income increases by more than $1.25 for every $1 spent. If a nonprofit reports impact but doesn't meet the benchmark for cost-effectiveness, it earns a score of 65. This program increases income for a patient with medical conditions by more than $2 for every $1 spent.
Methodology
This impact score was determined through the Financial Assistance for Medical Patients methodology which is fully detailed in the Charity Navigator Guide to Ratings. Analysis conducted in 2023 by Charity Navigator using data submitted by the nonprofit, theory and evidence from scientific research studies, and public datasets.
Data Source
The nonprofit submitted data on the dollar value of all financial assistance provided to patients, which we use to calculate the additional income received.
Measurement
Unscored
0% of Impact & Measurement score
Culture & Community
Not Currently Scored
Shwachman Diamond Syndrome Foundation Inc. cannot currently be evaluated by our Culture & Community methodology because we have not received data from the charity regarding its Constituent Feedback or Equity Practices strategies.
Note: The absence of a score does not indicate a positive or negative assessment, it only indicates that we have not yet evaluated the organization.
This beacon provides an assessment of the organization's leadership capacity, strategic thinking and planning, and ability to innovate or respond to changes in constituent demand/need or other relevant social and economic conditions to achieve the organization's mission.
The nonprofit organization presents evidence of strategic thinking through articulating the organization's mission.
RAISING AWARENESS OF AND SUPPORT FOR THE SHWACHMAN-DAIMOND SYNDROME DISEASE. THIS IS DONE THROUGH EDUCATIONAL CONFERENCES AND THE PUBLICAITON OF PERIODALCS SUCH AS NEWSLETTERS AND BROUCHURES. RESEARCH GRANTS ARE ALSO AWARDED FOR THE STUDY OF THE SYNDROME.
Vision Statement
The nonprofit organization presents evidence of strategic thinking through articulating the organization's vision.
To provide support and education to families affected by SDS. To educate the public and medical prof
Strategic Goals
The nonprofit organization presents evidence of strategic thinking and goal setting through sharing their most important strategic goals.
Goal One: To continue to advocate for patients
Leadership
30 out of 30 points
Full Credit
Partial Credit
No Credit
Investment in Leadership Development
The nonprofit provides evidence of investment in leadership development.
Attending conferences and receiving guidance from NORD.
External Focus on Mobilizing Mission
The nonprofit provides evidence of leadership through focusing externally and mobilizing resources for the mission.
Strategic Partnerships
Collaborative Engagement
Thought Leadership
Social Promotion
Public Policy Advocacy
Adaptability
30 out of 30 points
Full Credit
Partial Credit
No Credit
Adaptability Statement
30 out of 30 points
The nonprofit has an opportunity to tell the story of how the organization adapted to tremendous external changes in the last year.
As COVID has curtailed most activities we have moved to social media to continue are awareness campaign.